Feeling Thankful

I've always been grateful for Jackie and Anthony's medical teams. They truly stopped at nothing to make sure they were in the best of health despite the horrible diagnoses they had. So many times they exceeded my expectations. Whether it was tending to their care, stabilizing them or coordinating emergency care, they have always come through. So, it is no surprise to me to see the dedication and bravery the medical profession is showing in combatting the novel Coronavirus.

As a mom of 2 transplanted children, this disease scares me to death. I constantly worry and make sure they are not exposed. Yet, when the rest of the world is distancing from it, the medical profession is gunning for it head-on.  Knowing doctors and nurses as long as I have, I know they would settle for nothing less.















For all the help they have given my family I wish there was a way to help them now. And so I do what I often do when I want to help but have no means to do so - I write. So, medical professionals everywhere, this is for you.

All About Biliary Atresia

In my newest children's book made especially for other children living with liver disease and transplantation, the main character, Olivia, has a liver disease called Biliary Atresia, which caused her to need a liver transplant. In today's post I will discuss just what this disease is, how it is treated and what to look for. 

What is Biliary Atresia?

Biliary Atresia is a very rare liver disease where the bile ducts from the liver are blocked. It is estimated that one in every 10,000- 20,000 live births are born with the disease. In addition to the large bile ducts being blocked, the disease begins to spread to smaller bile ducts. This means bile can't drain from the liver properly. If left untreated, the liver becomes scarred and loses it's function. Treatment is needed as soon as possible. After testing to be sure the disease is in fact Biliary Atresia, a surgery called the Kasai procedure is done in order to regain bile flow. This allows bile to flow, however it can't reverse the scarring of the liver. Often times a liver transplant is needed down the line. 

What are the symptoms of Biliary Atresia?

• Yellowing of the baby's skin
• Yellow eye whites
• Dark Urine
• Pale, white or clay colored stools.

If a child is diagnosed with the disease, there are many places to get support. 

• My first suggestion is to READ, READ, READ. This is the reason I wrote Angel Donor. It is for our brave kids battling this disease. Parents and caregivers, be sure to read about the disease. There are many articles out there. Ask your child's doctors for their favorite resources and books about the disease. 
• Get support online or in person. Ask the hospitals if there are support groups, other parents who are going through this, etc. My two favorite places for online support (which I've also listed in the back of Angel Donor) are: http://www.classkids.org  and http://www.liverfamilies.net. The parents and administrators there are full of information and support. It's great to talk with people who know exactly what you are going through.
• If you feel the need, you can set up a secure, special web page to share updates with the family. The last thing you will be thinking of during a hospital stay is calling all the family members and repeating the update on your little one a hundred times. Once you get a private moment to yourself, you can update the page and everyone will be in the loop. One great website is http://www.caringbridge.org . It is secure, so only people you give the direct link to can access the page.  

If you have found this post in your search for answers about this disease, I hope that I have helped you some. Feel free to comment here anytime. I would love to help in anyway I can. 

Press Release for Angel Donor

My press release for Angel Donor. Feel free to share. If you do, please comment with the link and let me know and I will comment on your blog where the release appears.

New Children’s Book Geared toward Children in Need of Organ Transplants

FOR IMMEDIATE RELEASE
Philadelphia, Pennsylvania, United States of America

July 1, 2012

On June 6, 2012 children’s author Jennifer Gladen’s third children’s book was released from Guardian Angel Publishing. The new book, Angel Donor, is a story about a child in need of a liver transplant and the day she gets “The Call”.  As taken from the cover: Olivia never asked to have a disease like Biliary Atresia. It made her liver sick and only a transplant will make her better. After waiting several months and close to losing hope, she gets the call she’s been waiting for. The journey of her life is about to begin. The book is complete with a glossary and a list of resources for dealing with transplantation.

When asked what made her write this book, Ms. Gladen said, “It was inspired by my daughter. When she went through her transplant and the long wait beforehand, I was looking for something to help her understand what was happening that spoke to her on her own level. It’s a book that needed to be written.”

In addition to Angel Donor, Jennifer Gladen has two other books out titled A Star in the Night and Teresa’s Shadow. She is also the founder and Editor-in-Chief of the online magazine My Light Magazine.

For more information about Angel Donor or author Jennifer Gladen, please visit her at www.jengladen.com or http://www.facebook.com/AngelDonorBook

Find Angel Donor at Guardian Angel Publishing

Angel Donor is now available directly through my publisher, Guardian Angel Publishing. What better place to get the book than directly through the publisher? The direct link is http://www.guardianangelpublishing.com/angel-donor.htm . Be sure to browse the rest of the site and see what other top notch books they have.


Here's a sample from the book - also shown on the publisher's website:

If you get the book, please be sure to tell me what you think of it. I'd  love to share your comments and reviews. 

Welcome to Angel Donor 's Blog

When your child had any medical problem, it is hard. But it is even more tough when a serious disease occurs which results in the need of an organ transplant. Many families deal with this situation - more than I care to admit, including my own family. My daughter needed 2 liver transplants and my son is a kidney patient who may need a new kidney in the future. Which is why, in part, I wrote the picture book Angel Donor and created this blog. The goal is to of course raise awareness of organ donation, but also to provide support and validation to others going through the same things. May this blog and book be helpful to you. Feel free to leave comments about the book. I would love to share them with my readers to help let them know what the book is about and what other readers thought of it.